I am making this a "sticky" so that people can access it more easily. It is such a great resource.

Scott F brought this article to my attention that would be a good article to just have on hand or even to share with your GI or primary doctor s a resource. A good one to have in your file.

It is Dr. Shen's article from last year entitled, "Pouchitis: What Every Gastroenterologist Needs to Know." It is very comprehensive and up to date, with diagnostic methods and management protocols. If you want to suggest alternative ideas, presenting this authoritative article may help avoid being dismissed.

It is not just an abstract, but the full text. Click the link on the right to access full text.

http://www.ncbi.nlm.nih.gov/pubmed/23602818


Jan Smiler

Edit: Here is a link to another, more recent article for you.

http://www.ncbi.nlm.nih.gov/pm...bstractid963262title

Original Post
Thank you Jan, for this article, I will bring it with me to my next appointment, if I can get one.
I am about to loose my mind, because I have an end ileostomy and it will be 2 years in april. I have switched from one hospital to another and well, I feel like I have been left in the cracks.
I have been dealing with anal leakage for quite a while, well to be honest since the end ileostomy, and was told that it was normal was due to fistulas, and well being disconnected , things would calm down n clear up.
My frustration and worry is things are not getting better, actually I have been feeling worse. I ended up in ER before the holidays because I can't get a hold of dr. Long story short after months of complaint, I begged the residant that saw me in ER to give me some anibiotics. I was to see a dr a week later, but it wasn't the nicest of doctors.
I have a question? For the first time in my life I was examined this way... She put me on a examining table were I kneeled down payed flat on my tummy, then my upper body was lowered where my head went down and my butt was up in the air! She then put a scope in me, she was very rough, I streamed so loud the pain was unbearable, it was so brutal I felt so violated Frowner she was so rude!! She left me there with blood gushing down my legs, telling me to meet her in her office. When I finally got the strenght to clean my self up with the tissues I had in my bag, I manage to make it to her office in tears, she was standing in front of her desk stating that she had no clue why my dr was wasting his time on me.
She blurts out your pouch is full of pouchitis get rid of it put a permanent bag n move on with your life!!!!
I felt like I got ran over by an eighteen wheeler. This was not happening, have they not been paying attention to what I have been through and by what I was complaining about or was this just a bad dream!
At this point I had some salofalk at home and started one those and continued on the antibiotics .she basically washed her hands and told me wait for your dr. See what he want to do but she wasn't wasting her time.
At this point I beg to go see someone at the infectious desease because my dr was still out of town and the ones that were there weren't interested on helping.
I feel in the hand of a nice dr.whom was shocked about what happending and was willing to follow me while on flagyl and cipro .
After being on them for 3 weeks was starting to get side affects of nausea lack of appetite and pain in my legs and ankles . He then decided to switch to avelox, five days later symptoms were better but started getting severly itchy skin and the dischard was a little better but not drastically.
Question is the discharge at times is bloody and I feel at times the need to push is tis normal???

I never heard of cuffis, or of bacterial overgrowth? I' m really scared and to be honest I'm losing trust in these doctors, and am scared that my situation has been neglected for to long that I may end up losing my pouch due to negligence,!!

Help!! Does anybody have any suggestion?? Anything would be helpful, because I really feel like I've been tossed to the curb... And ya Montreal' s medical system is getting worse by the minute!!!!

If I only had the funds I would so go to see the dr guru you all mention.. But I haven't lost hope, this site keeps me fighting n hopeful thank you all!!
L.DL,

PoucherInTo is so right. Please post your issues under new topic. You were treated so horribly. Those people should be kicked out of the medical profession, showing such lack of compassion.

Your post ticked me off at those people.

I hope one day if they are put in a situation like yours, they remember what they did are are sorry for it.

Rocket
Sorry, but I did not see this question when it was first posted. A "sticky" post is just one that remains at the top of the list of threads, whether it has new posts or not. It is placed there by a moderator so that members can maintain easy access to it. Otherwise, it can drop way down the list and new posts have to be made to share the link.

Jan Smiler
article by shen jan..i read it all..he knows his stuff for sure but as he said in article ouchitis(not occasional) is challenging..and symptoms of pouchitis can be other things as well..thus the importance of the yearly exam..and there is no quick fix.. what is available can be wanting..no one knows that more than me!!!!trial and error is part of the equation ...

i think something pointed out may be of interest..those with u.c are more likely to experience pouchitis issues after pouch operation than F.A.P PATIENTS.. thus majority of refractory pouchitis were u.c sufferers..they have come a long way in understanding these problems since my operation even since 06..but unfortunately it might be some time before they have better solutions for dealing with them..
"Ouchitis?" A typo, Rebecca, or Freudian slip?!

Yes, Dr. Shen wrote a very comprehensive article. I have read many of his articles, and by other authors too. A recurring theme has always been that chronic pouchitis is quite complex, with many etiologies, disease courses, and treatments. There is no one "rule book" to follow, other than whatever works for you. This is why sharing ideas is good for coming up with new options to try, but by no means any sort of assurance of effectiveness.

It has long been known that pouchitis is primarily associated with IBD (I remember reading about it after my surgery in 1995). This is why it is felt that chronic pouchitis may be a new form of IBD. Those without IBD do get pouchitis, but it is usually related to NSAID use, infection, or bacterial overgrowth. To complicate things further, those with IBD are also subject to those issues too.

My mind wanders to the concept of "herding cats" to describe the challenge of treating chronic pouchitis. Soon as you think you've got it figured out, all Hell breaks loose!

Jan Smiler

I am new to this page and wish I had known of this support years ago. My original surgery was 2002, a result of an over 30 year battle with UC. I am 60 and have a family history of colon cancer. I had a less than successful original surgery where I was released from the hospital with a huge abscess in my gut.

I had a total of 13 surgeries in the following 2 years and have been dealing with Chronic Pouchitus for the last 7 years. I have been treated by some outstanding doctors and surgeons as I have access to very good university hospitals. I agree the the treatment for Pouchitis is whatever works best for the individual. I have Neuropathy as a result of prolonged use if Flagyl. 

My fear is that I will have to have Ostomy unless I find something that works for me. I have been told my original surgeon left me with a "Short Gut" and I would have to have Ostomy placed in same area. Problem with that is I was unable to process my food and had to be nourished with TPN.

I appreciate reading everyone's stories in hope I will be able find a treatment that work for me. Thank you for sharing. 

This sounds nuts but chewing up Augmentin and Cipro before i swallow them has reduced my fistulas and pouchitis from a 5+ to about a 2. Either that or I have just randomly improved. Ironically I am scheduled to start entyvio next week for pouchitis. We'll see if that helps me improve more
Originally Posted by RHolt:
Originally Posted by Jan Dollar:
I am making this a "sticky" so that people can access it more easily. It is such a great resource.

Scott F brought this article to my attention that would be a good article to just have on hand or even to share with your GI or primary doctor s a resource. A good one to have in your file.

It is Dr. Shen's article from last year entitled, "Pouchitis: What Every Gstroenterologist Needs to Know." It is very comprehensive and up to date, with diagnostic methods and management protocols. If you want to suggest alternative ideas, presenting this authoritative article may help avoid being dismissed.

It is not just an abstract, but the full text article:

http://www.cghjournal.org/arti...3%2900483-7/fulltext

Jan Smiler

 

Sorry---I hit the submit button before writing!! I just want to say thanks for the great article. Also, in reading through people's experiences here, I am SO sorry that you have had so much trouble with pouchitis. I think I have had it once or twice, but I never took antibiotics. My symptoms were not increased urgency, but blood in the stool and in the toilet bowl water. The doctor did a scope of the pouch and took samples that showed inflammation and irritation. The bleeding stopped, so I did not press to be on antibiotics, but instead I took probiotics. I want to learn more about these and try to find something more affordable than VSL#3 that works.

If you had bleeding it was more likely to be cuffitis than pouchitis. Some docs do not describe the difference and consider it all the same. Pouchitis would not have gone away without treatment. But, like UC, cuffitis can wax and wane regardless of what you do. Mesalamine or hydrocortisone suppositories are the primary treatment for cuffitis, not antibiotics.

 

Jan

hi  ty I cannot  find which article it is.. also how long is a course of c/f?? this is about my 3rd week and skin condition has improved somewhat(due to aquafor) but pain  awful still. when I take pain meds now many times I have to take benedryl for the itch.. not a good way to live I am glad I have this group

Jan recently posted a link to another excellent pouchitis-related journal article. Reposting it here so we can all find it again if we need tools to educate our doctors (or just for an informative read):

-----------------------------------

Jan wrote:

Here is a link to a newer article that describes pouchitis and other pouch disorders that mimic it. It is easier to read than the one I posted in the pouchitis forum, but it is still a clinical journal article.

http://www.ncbi.nlm.nih.gov/pm...bstractid963262title

------------------------------------



I got diagnosed with irratractible pouchitits in 2000. Tried every antibiotic, including Cipro, Every single clinic I went to. Remicade, entyvio, everything I tried. I had a fistula so huge between my Anus and Scrotum that when I got it lanced, the surgeon was legitimately concerned. I was getting abscesses lanced twice a month.

As of today I have been 90 percent better for 1 yr. Firstly and most importantly, my intestines were not absorbing the antibiotics. I randomly started chewing them into paste, Augmentin and Cipro, and my abscesses and pouchitits cleared up in 3 days. Dr Peter Rubin in nyc said "your intestines are comprised and haven't been absorbing the antibiotics for the last 17 years". Ha would've nice to think out of the box like I did, a little earlier.  My scope showed no pouchitits. Some tissue is still damaged where the abscesses were, but nothing is active. Unfortunately I do need to take these antibiotics every day but I am considering trying some other methods. I just don't feel, whatever is out there, is strong enough to kill What's going on in my pouch. Rubin said I had been absorbing about 10 percent of these antibiotics since 2000, because after the jpouch surgery, my gut just doesn't absorb certain things.

Simithicone... I take about 10 gel caps right before meals. It wipes out gas. You know that horrible cramping we get? That's from gas in the inflamed area sometimes. My pouch has trouble passing gas. I've heard other people do too. I actually can only pass gas if I'm lying on my stomach. Anyway simithicone(I feel like I'm spelling this wrong)  wipes that gas out.

I also use some other unorthodox methods. But science says whatever I'm doing is working. Please make sure you're digesting all your antibiotics. Take the liquid forms if you don't want to chew them up. If it doesn't help you within days, than I guess we all really have different causes for our chronic pouchitits.

If you decide to take your antibiotics the way I described (Cipro tastes terrible. Augmentin tastes not so bad) and you improve within days, please let me know? Dr Peter Rubin confirmed my pouchitits is non-existent. The reason is the fact my intestines weren't absorbing antibiotics. I am 90 percent better now. That should motivate people at least to look into this with your doctor. I could not leave my bed a yr and a half ago. I had pouchitits and rectal abscess. I go to the bathroom about 3 times a day now. I am on a strict diet. When I go to the bathroom, I sit backwards on the toilet. I know that may sound silly, try it. I believe my pouch empties 20 x better this way. When I'm having trouble emptying my pouch and what's backed up in my small intestine, I give my self a colocort, just to flush out my pouch. I don't know why the liquid in fleet enema doesn't work, but it doesn't. Sometimes I need an enema. Sometimes I do not. I do believe part of our problems stems from not emptying our pouches completely.

 

List of antibiotics I've tried (but not chewed in paste or taken in liquid form) since 2000: Flagyl, Cipro, Levaquin, Amoxicillin, Tequin, Zyvox, Xifaxin, Augmentin. 

After cultures were taken I was told Augmentin and Cipro. They didn't work until randomly, just as a hail Mary pass(I had just noticed that I hadn't digested spinach!) I chewed the antibiotics. 

 

Stormwatch, what type of cultures are you referring to that indicated augmentin & cipro were (or were not?) working? I would definitely be interest in more info to determine which antibiotic help and individual and which are a waste of time.  Thank you!

Jan, thank you for the new link. I'm curious to know if you, too, could add to throw topic of antibiotic cultures. Thank you!

Jan, I was wondering if you had any info on a test to determine if a specific antibiotic is working for an individual or if enough antibodies had built-up in his/her system to render the antibiotic useless. Many people tell me that they know of someone else who was tested, but were never able to provide enough info for a successful Google search.

They can do stool cultures, but that is mainly for when there is a specific pathogen they are looking for. Pouchitis is generally not an infection, but an inflammatory response to normal flora bacteria. Cultures would not show anything unusual.

Fecal calprotectin is a test that helps quantify intestinal inflammation. This might be what you are looking for.

Pouch endoscopy can show visible improvement.

We do not develop antibodies against antibiotics, since they work against bacteria, not our cells/tissues. They can become ineffective because the bacteria evolve to become resistant to the antibiotic. This is a major problem with antibiotics in general and why there is a big push to reduce their use as much as possible. Overuse of antibiotics are responsible for the development of "super bug" strains, especially in the hospital environment.

Jan

I have been very lucky with my pouch, but 3days ago, I started having gas pains, abdominal cramps, and having trouble passing very much stool at a time, even tho I have urgency. From what I have read on the site, it sounds like possibly pouchitis?? My surgeon that did my surgery has passed away and his partners are  90 miles away, since this is a Friday night, if I go to ER, I wonder what my chances are to at least get a RX for Cipro, until I can get ahold of someone on Monday. My gastroenterologist that originally diagnosed me is retired and his practice is closed. I am a pharmacist, so maybe the ER MD would listen to me??? Vickie

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